Saturday, December 17, 2011

[So I started writing this on a the bus, but actually I'm currently in my apartment in Pittsburgh, not the Megabus just so you know]

Hello from a Megabus! I’m on my way to Pittsburgh right now, heading back to my apartment, my life, my friends, my old self.I have this feeling now that I’m creeping closer to the day when I get to resume grad school and working that it’s too soon.Before I felt like I had all the time in the time in the world to prepare for re-immersion into the real world. But all of a sudden it seems so soon and so fast.In a few weeks the semester will start.I’ll go back to my internship.I’ll be living in my apartment again.So much, so quickly.It’s freaking me out a little.But that doesn’t mean that I don’t want it to happen.I guess I’m just questioning how hard of a transition it will be for me psychologically, emotionally, and physically.Am I going to be too tired to do everything?Will I get depressed if I can’t?Will I be able to graduate this summer?

I don’t know.I don’t know.I don’t know.

These are the questions running through my head these days.Now that I’ve let go of a lot of the uncertainty that came with this course of treatment, I feel more confident that health-wise I will continue to improve and (hopefully) reach full remission.However letting go of that uncertainty means that I’ve made room for all sorts of new worries.I’ve let go of being in “survival mode” and now all the emotion and feelings that I pushed aside and told, “I’ll deal with you later.This is not the time for tears.It’s a time for strength and positivity.We have to survive, so hush, you’ll get your turn soon enough.”

Well here they are.Demanding attention, having waited their turn.But I don’t want to pay them any attention.I don’t want to sort through sadness and anxiety.I want happiness and celebration.I want to feel good and light.

But there is no denying that there is a feeling of heaviness lingering around me.The feeling that you just went through something big and you need to look it in the eye and give it its due respect.

The bell has sounded and the hard part is over.It’s only right that I turn around and take one last look at my defeated opponent, to put my hand on his shoulder and say,

“You fought well, but I fought better.”And “You’re strong, but not as strong as I am.”And, “You were tough opponent, but just not as tough as I am.”

But I don’t want to turn around and look back.What if he has one more hit in him, one that I can’t block?I want to keep walking running away and never look back.I used up all my bravery to get this far.I’m all tapped out. (Can't someone else do it for me?)

It’s like at the end of a scary movie, after the bad guy is assumed dead, but he always has one last scare in him.Even if he’s lying on the floor bleeding like mad, you’re still nervous because he’s in your sight and history has proven that the bad guy always has one last murder attempt in him.So you have to yell at the main character, “Don’t you put that gun down, girl! You know he isn’t dead!”

Aplastic anemia is still too close for comfort and I don’t know if I can put the gun down, as much as I want to move on.

It’s like if you’ve been in a car accident or close call, you know that you don’t relax immediately after you’re out of danger.Just because the impact is over and you’ve pulled your car over to the side of the road, doesn’t mean you are calmly waiting for medical attention.The adrenaline will run through your body and you’ll be shaking for a while.And the next time you get into a car or drive past that intersection where you got hit, that feeling will return, and you’ll remember how scared you were.

That’s where I am right now.I’m here and I survived.And I intellectually believe the worst is over.But I’m still reeling from the impact of the crash.My hands are shaking, my legs feel weak, and my mind is still spinning with the possibility of a very different ending to this story.Part of me is not fully convinced that it’s okay to put the gun down, take the boxing gloves off, and walk away from the crash (I’m apparently loving the analogies this morning).Part of me doesn’t believe that life will leave me alone now because I’ve proven I’m not to be messed with.I can still feel this disease hanging over my shoulder, holding me back.

Baby steps.I think that’s key.I’m not going to be the same person I was when I left, the moment I move back to Pittsburgh.I think expecting myself to be will only make me depressed.And unfortunately, as much as I want to bury these feelings, I think I have to let myself feel the weight of what just happened.I have to let myself be sad, because I am a little.I have to let myself be disappointed with life, because I am a little.And I have to let myself believe that I am strong enough to feel those things without becoming them.Happiness feels lighter when it’s not a mask covering up sadness. And I want the lightness that I know is to come.

Monday, December 5, 2011

So I’ve already told you guys about some of the joyous side effects of my medications (i.e. extra chin, hairy man-legs).Those are fairly typical side effects with Cyclosporine and steroids, but there are also some things that are not as typical that I get to enjoy as well.I’ve been gathering this little list in my head for a while so I thought I would share them with you peeps:

1.)Hand tremors.You should see me try to put on mascara or paint my nails.Eating soup is also ridiculous.It’s like I’m 80 years old.

3.)Burning hands.This one is weird.When I’m cold my hands hurt like they’re burning.The best way that I can describe it is like the feeling that you get when you come inside after playing outside in the snow for a while.You know how your hands are so cold but the house is warm and your hands kind of burn but it’s hard to tell if they are really hot or really cold?It’s like that.I also can’t tell when things are hot and cold by touching them with my hands.When I reheat something in the microwave, I touch them with my finger and it will feel like it’s really hot.Then I take a bite and it’s lukewarm or cold.It’s so strange.So I’m not the best person to ask to reheat something for you, unless you don’t mind me taking a bite of it to see if it’s warm.

4.)Space Cadet status.Cyclosporine makes you feel like you’re in a fog, everyday.It’s probably the most frustrating side effect.And surprisingly, it is the most evident to me in social situations.When I’m in a group of people and trying to follow the conversation, it’s a struggle to stay focused on what everyone is saying.So if we’re having a conversation and my eyes glaze over or start to wander, it’s not because I don’t care what you’re saying.It’s just that it’s hard to concentrate.

5.)Scaley Palms.Bear says it looks like I’m turning into an amphibian.When I get out of the shower, my hands look pruney (normal), but the palms of my hands are hard and peeling (not normal).It’s worse on my left hand.I have no idea what it’s all about, but maybe Bear’s right?I’m turning into an amphibian :).

6.)Oily skin.Yay acne! I missed you and was really hoping you’d come back for a visit in my mid-twenties.

7.)Flushing skin.Sometimes I’ll be in the middle of telling a story and all of a sudden I turn pink from my chest to my forehead.But I’m not embarrassed.Just hot and pink.It happens after laughing or crying also.It’s weird.

8.)Long, long hair and long, long eyelashes.Yes! There is such a thing as a good side effect! The silver lining :)

As a result of the above weirdness, I’ve picked up some habits to adjust to the side effects.Since I’m a space cadet and have a hard time focusing, when I’m in a group of people I tend to choose one or 2 people to talk to and ignore the rest.Not trying to be rude, but I just can’t keep track of so many people’s convos.

When I’m watching a TV program that has a complicated plot, sometimes my brain just completely ignores certain subplots of the show.For example, if there’s a crime show that has a love story in it, I’ll only follow the love story.I couldn’t tell you who killed who, but I know who hooked up.It’s not a conscious decision, it just happens.

Shortly after entering a store or house, I know all the places that I can sit down.I’m constantly surveying for places to put my butt if/when my legs start to hurt.This is especially true in large stores, like Meijer, Costco, Sam’s Club, any home improvement store, and any store with “Super” in front of it.(Seriously Lowe’s is like my worst nightmare.Why is it SO big??)Summer was good because most stores like these have outdoor lawn furniture on display.Perfect.Oh, I’m just trying out this lovely bench swing you have here…no biggie.Nobody even looks twice at you.Now that it’s colder it gets tricky.I’ve had to improvise.I went to Costco with my mom and sister a while ago and needed to sit down.I looked for the any piece of furniture on display to sit on…nothing.I looked by the concessions…all tables were full.So we wandered down the soup aisle and at the end I found a stack of sacks of rice.Not too low, not too tall…slightly embarrassing to sit on?Yes.Does it matter when you’re that tired?Not at all.Sometimes you’ve just gotta do what you’ve gotta do.So I sat on those sacks of rice.And it was glorious.

I went to the doctor last Thursday and my counts were:

Platelets: 59,000 Hb: 10.2WBC: 2.2

Platelets are sloowwwwly climbing and my hemoglobin is the highest it’s been.Yay!My white blood cells were down a bit, probably because I had a fever on Monday.

Thanksgiving was lovely and delicious.My sister and I completed the Ann Arbor Turkey Trot for the 4th year in a row, although we had to walk it this year since somebody went and got a disease…geeeez what a downer.;)

I also enrolled for classes next semester (waaahhhooooooooooooo!!!).Really no one should ever be that excited to take grad school classes, but I think you can imagine why I am pretty pumped.

Thanks for reading this random update, and I hope you’re enjoying the holidays!

Sunday, November 13, 2011

I read the book, Love is a Mixed Tape a few years ago. It’s a memoir written by a reporter for Rolling Stone about falling in love with his wife and then dealing with her sudden death a few years after they were married. It’s a great book, in spite of the sad premise; especially if you’re one of those people who can define different periods of their life with what music they were listening to at the time (guilty). When Sheffield loses his wife he is heart-broken over the loss. However as life moves forward, he realizes that there is something else equally as heartbreaking that goes along with loss and difficult times in life. And that is the tidal wave of human kindness that inevitably follows every tragedy.

“Human benevolence is totally unfair. We don't live in a kind or generous world, yet we are kind and generous. We know the universe is out to burn us, and it gets us all the way it got Renee, but we don't burn each other, not always. We are kind people in an unkind world, to paraphrase Wallace Stevens. How do you pretend you don't know about it, after you see it? How do you go back to acting like you don't need it? How do you even the score and walk off a free man? You can't. I found myself forced to let go of all sorts of independence I thought I had, independence I had spent years trying to cultivate. That world was all gone, and now I was a supplicant, dependent on the mercy of other people's psychic hearts.”

If you have ever been ill or lost someone close to you or been through a tough time, you know the way that the kindness of others can build you up and break your heart at the same time. Being sick has exposed me to so much kindness that I will never be the same.

When I was initially diagnosed with aplastic anemia, I was studying abroad in Ecuador and had to be medically evacuated on a small jet to Miami. Once I was in the U.S., it was my own problem how I was going to get back home to Michigan. I stayed in the hospital in Miami for a while but needed to eventually get home for treatment. I was too sick to fly commercially (low platelets + cabin pressure = potential cranial bleeding = no good), so I had 2 options: pay approximately 30,000 dollars for a private charter plane to take me home, flying at a lower, safe altitude, or drive from FL to MI. And here comes the kindness kicker: the head doctor at the health clinic at Michigan State University (where I was going to school) offered to fly down and drive with us back so that she could monitor my health throughout the trip. I had never met her before.

That seemed like our only option, until a family acquaintance called to say that he had extra time on his charter plane and offered to let us use his plane. For free. I had never met him before. I still have never met either of them.

When I first got diagnosed, my second cousin called my parents from Afghanistan to say that he was getting registered to be a bone marrow donor. This I just can’t understand. My second cousin…risking his life for our country…calls from a war zone…to offer his support…and his bone marrow to me. ME. WHY?

My sister went to visit her boyfriend, Sean’s uncle who is far too young to be in hospice care, fighting brain cancer. When my sister arrived his wife asked her, “How’s your sister doing? We’ve been praying for her.” To which, Sean’s uncle added, “She’s at the top of our list”.

When I was diagnosed, my community hosted a bone marrow drive for me. Hundreds of people came. People I hadn’t spoken to in years, people who knew my mom but had never met me, people who heard the story and just showed up.

My dad is a hockey writer and has covered the NHL for over 25 years. I have always heard that the hockey community is a small one and they take care of each other. Since getting sick I know this to be true without question. There was a week after I came home from the hospital where I got a package everyday from an NHL team or employee. A cookie basket from the Nashville Predators. A package from the Pittsburgh Penguins with a Pens hat, bobble head and a letter from Mario Lemieux. A sweatshirt from the NHLPA. A t-shirt and keychain from the Anaheim Ducks.

Are you shaking your head at this list?? I am. I am floored by these stories. I understand kindness. I have seen moments that leave me feeling like my chest might explode from witnessing such selflessness. But it something quite different when it is directed towards me. It confuses me because I feel undeserving. It pulls my heart in a million directions. It makes me sad for some reason, but it also brings me joy. It makes me want to cry, but it also makes me smile. But most of all, it is humbling. It’s like if everyone figured out that you couldn’t afford groceries, and when you came home to your house, every room was full of groceries. What you were once lacking, you now have in abundance, and you can’t help but look around, touched, but wondering, “What will I ever do with all of this?”

That’s how I feel about the kindness in those stories. What will I ever do with all of this? Because it is certainly more than I ever expected.

I think that this is the type of kindness Rob Sheffield was talking about. It’s in the moment in life when your world collapses around you and you think you might never heal from it. When you think your legs will never be able bear your own weight again because the sadness, the fight that’s ahead of you is too much. It’s in those moments when the kindness and strength of your rallying community will take your sorrow and fear and turn them to ash. And it is an incredible thing to experience.

But it also comes with a price. Because this type of generosity will make that cynical, self-preserving person inside you, squirm uncomfortably. That strong-willed, independent person that you’ve been building up your whole life, will not survive the assault. After you’ve been on the receiving end of such kindness, you cannot go on thinking that people are to be kept at arm’s length, because there is too much potential to get hurt. You can’t go on thinking that you don’t need anyone, that you can do it all alone.

The truth is that while we celebrate individuality and independence in this country, we need each other. No man is an island, no matter how hard he tries. We were never meant to go through this life alone, especially not the difficult times. So I’m giving it up. The independent, stubborn girl inside of me is buckling under the weight such generosity. I’ll acknowledge that I need the kindness of others. I need help sometimes. I cannot do it alone. But I also promise to return the favor. I will recognize the weakness and silliness of myself but only so that when I see it in others, I will feel empathy and offer in abundance what has been given to me without hesitation.

If you can kill someone with kindness, then I have been killed 10 times over by all of you who have said a prayer on my or my family’s behalf, or hugged my mom, asked my dad how his daughter’s doing, or read and commented on this little blog, or sent a card, a care package, an email, or the tiniest good thought my way. Your goodness fills me up and encourages me. It reminds me that God is good and will provide us comfort in difficult times. I cannot thank you enough.

I had coffee with my pastor and his wife recently and we talked about our love of international work and ministry. He told me how much he wants to work internationally, but that his love for his family always brings him home. He told me that people are like warehouses, always needing eventually to be restocked with whatever we need in order to continue to do good in this world. Without intending to, this time at home has allowed me to restock the shelves that were getting filled with anxiety and fear, with all things good and light. And I owe it to all of you. So thank you, for breaking my heart in the best possible way.

No counts to report this week because they gave me a week off of going to the doctor. I have an appointment Tuesday and I will let you know then! I have knocked a few things off my 25 by 25 list too. I'll tell you all about it soon :)

Sunday, November 6, 2011

Here it is! The challenge I've given myself as a way to kill time/improve my culinary skills while I have free reign of my parents' kitchen and cooking supplies. :) It's a pretty random collection of 25 things that I have never made (or never successfully made, I should say), to be completed by my 25th birthday next April. I'll keep you posted with how it's going!

5.My brother Shane and his wife+baby bump came to visit from Chicago for Shaner’s birthday.Their visit meant dinner at our fave Mexican restaurant, going to the movies, pumpkin donuts from the cider mill, breakfast at our favorite diner, and pumpkin carving.Which was a disaster on my end.I’m still a wimp.I had to hand the reins over to my brother by the end because I was too tired.Pretty lame.

6.I made a layered cake for the first time in my life for Shane’s birthday.It was a success!It took two days and all of my energy, but it was bomb.

7.I got to spend the weekend with my sister and her boyfriend, my best friend from college and a blue pit bull named Blue.This is always a winning combination.And yes, Blue is as cute as he sounds.

8.I got a care package from my roommate in Pittsburgh.And it is a well-known fact that care packages make everything better. :)

9.I went back to the doctor today and my platelets went up to 45,000.My hemoglobin is 9.5 and WBC are 3.0.I don’t have to get my counts checked again for 2 weeks!

10.And to top off this happiness, with my counts on the rise, there is likely a visit to the ‘Burgh in my future.And maybe my bro and sis in Chicago.YAY!I can’t wait! :)

Oh! And speaking of baking, I’ve decided to steal an idea from some of the food bloggers that I follow/am obsessed with.I’ve seen lots of food bloggers who are nearing their 30th bday do “30 by 30” lists where they try to complete 30 recipes they’ve never made by the time that they’re 30.But since I don’t think I need 6 years to finish 30 recipes, I’ve decided to do “25 by 25”.This might be a bit ambitious since I only have 6 months to do this, but I’ve currently got nothing but time on my hands, so why not?I’ll give you my list in a different post.

Sunday, October 23, 2011

It has taken me foreverrrrr to post. I am so sorry if you were worried, but there is nothing to be alarmed about. I’ve just been slacking. (sorry) I wrote this about a week ago, but couldn’t quite wrap it up/couldn’t get myself to click “Publish Post”. Then I had the following conversation with my sister (who I call Bear).

Bear: You haven’t posted in a while.

Me: I know. I wrote something, but I just felt kind of…exposed writing it.

Bear: Isn’t that kind of the point?

Me:….yea…I guess it is.

So I’ve been nervous about posting this, although last week I told you some pretty humbling information, so I don’t know what I’m concerned about :). But I’m going to post it anyway even though it makes my soul feel exposed, because when I started this blog, I said that I wanted to be as honest as possible mostly for others going through the same thing or who will go through something similar and happen to stumble across this. And you never know how your story will affect others, so I will put this out into the universe and let it decide what it all means. Enjoy :)

In the Stillness

In my normal life, you know, the one where I am going to school or working full time or interning or doing some combination of the three, I am anxious. I always feel like I am one mistake away from everything collapsing around me. Have you ever felt like you had everyone fooled in some way or another and it was only a matter of time before everyone realized that you were a fraud? That maybe you don’t have it all together. That you’re not smart enough to be here. That you have more questions than answers about the faith that you love so dearly. I have always felt this. I have always felt that what I outwardly project is not an accurate representation of what happens below the surface. Because below the surface is utter chaos. There is a constant battle between who I am and who I strive to be.

When I am in my normal state I long for moments of stillness. I long for times when the chaos is quieted and I feel sure. I need reminders of how faith and community can strengthen a person from the inside out. And I find these moments early in the morning when I’m the first one awake and my apartment is quiet. There is stillness in the coffee I sip while staring out the dining room window, when the world is still calm and it feels like God and I are alone. I find the quiet when I run. When my mind empties itself and with every step I leave behind another insecurity, another fear that weighs me down. I find the peace in kind, confident words from someone who knows me inside and out, and believes in me. When I finally confess my anxiety to a friend and they gently remind me of all the things that make me, me. They remind me that even if all my fears came true, even if all of my dreams and aspirations failed horribly, they would land softly in the arms of my faith, my friends, and my family, and those failures would become opportunities.

But this current state is not my normal state. I am not working. I am not going to school. I am not being productive. Unless you consider completing season 1 of Gossip Girl, productive… This season of my life is defined by stillness. I have what I am normally so desperate for. My mind is calm and quiet. I’m not struggling to move forward and get ahead in life. I’ve taken a hiatus from stressing about where I “should” be at 24 in this society. I don’t really care. It’s so far from my current state of mind, I can hardly remember what it felt like to be concerned with it. A hush has fallen over my normally anxiety-ridden mind. The storm has quieted, and the ocean is calm.

What’s ironic about this, is that I feel less anxious now, when facing serious health issues, than before, when I was dealing with papers and deadlines and everyday stress. The stakes are much higher now, and yet…that familiar knot of anxiety that normally occupies my chest, is gone. Weird, right?

But maybe not. My friend’s mom was diagnosed with colon cancer a few years ago and is now in remission. Her diagnosis came after spending years juggling the stress of being a mom to three kids and very successful businesswoman. I didn’t know her before, but my friend tells me that she is far more relaxed now, even facing cancer, than she was being supermom. She enjoys her family, and her life, more now.

I think what it really comes down to is perspective. How often in life do you get to tell everything and everyone in life, “You go ahead without me for a bit, I just need a few months off”. For most people, the answer is never. And yet here I am, in the midst of such a blessing.

This is not a statement about how the sky is now bluer and that flowers smell sweeter. Not exactly, anyway. I don’t spend my days frolicking through fields and smiling into the sun’s glow. [Okay sometimes I do the second one…] But I’m still me. With the same insecurities and curiosities. This post is more to say that in facing this disease, I have realized that I have no control over how my immune system or my bone marrow behaves. I don’t have the power to cure myself. And that lack of control can lead you to two places: the first is swimming in anxiety and panic because no amount of effort on your part will change this situation. But what I have found is that in situations where you lack control, there is also opportunity to find a quiet place to let go of the struggle and let God handle things. And in that place, there is an incredible amount of serenity.

Counts for 2 weeks ago:

Platelets 12,000 Hemoglobin: 7.9 WBC: 2.7

I had my first and only transfusion since I’ve been home from the hospital. I had 2 units of whole blood because my hemoglobin dropped to 7.9. As much as I don’t want to have to get transfusions, I felt much better afterward.

Counts for Last week:

Platelets: 25,000 Hemoglobin: 9.8 WBC: 2.9

My energy level is MUCH better now than it was a few weeks ago. I’ve started going for walks on the path near my house and am feeling pretty good!

Friday, October 7, 2011

If I had to name two things that I am most insecure about in my physical appearance, I would say, like most women, #1 would be my weight. The second would be my combination of pale Irish skin and thick, dark brown hair. I’m not one of those girls who can go a week without shaving and you can’t even tell because their hair is so light. I hate those girls. I’ve got 2 days before I start to look like a man. Guess what 2 major side effects of ATG are??

Weight gain. And excess hair growth. SWEET.

Couldn’t I get a disease that made me skinny and hot?? Is that so much to ask?? I suppose it is. But sometimes if you’re really quiet you can hear the universe giggling at the silly joke they just played on me. Let’s make the girl who’s insecure about body hair and her weight, fatter and hairier! Tehehehe. Needless to say, I am lookin’ like a dime piece these days.

Oh and it gets better too. I’m growing hair faster than you can say, “get your hairy self to a beauty salon!”, BUT….my platelets are so low that I have to stay away from sharp objects, and hot wax. That’s right. I’m not allowed to shave! Or wax. Or even use tweezers. I can use Nair I suppose but it pretty much sucks and smells like cancer in a bottle because of all the chemicals in it. So if you run into me at Kroger looking like a chubby hippie with a unibrow, you might think “Wow, she really let herself go…” and I might want to say, “I swear it’s the Cyclosporine, I don’t usually look like this!”

But of course, gaining weight and hairiness are DEFINITELY worth it when it means I get to be healthy and resume my normal life again. So as much as it sucks, you eventually learn to laugh at it. And it really is kind of funny, let’s be honest. At least this time I knew it was coming. I didn’t get much of a warning the first time. I just woke up one morning, and SURPRISE! You’re as hairy as a gorilla! And so chubby it looks like someone inflated you like a balloon! Good times. :) But like last time, it’s only temporary. I’ve finished tapering off the steroids, which means I no longer have the appetite of a line backer and my platelets are on their way up, which means I will be able to shave again (hopefully) soon. Thank goodness for small blessings. And family and friends who love me in spite of unattractive side effects.

Also, if you’re wondering why it has taken me forever to write this blog post. I am truly sorry, but another glorious side effect of Cyclosporine (which if you didn't know, is the immunosuppressant that I take 4 of everyday), is difficulty focusing. Basically my brain is mush right now, so it takes me a while to form original thoughts and get motivated to do anything cerebral. Sorry! I’ll try to do better though. I promise!

Counts Update (as promised):

Last week: 9.0 Hemoglobin, 19,000 platelets and 4.0 WBC

This week my counts are 8.2 Hb, 22,000 platelets and 2.2 WBC

I’m not quite sure what the up and down means with my counts and honestly, I don’t think the doctors do either. But my doctor (who’s a genius) says not to worry, so I’m not going to, and you shouldn’t either.

Thanks again for reading this. I hope it made you laugh a little and I hope you have a beautiful day! Oh and GO TIGERS!!!! (we beat the Yankees!!) And GO LIONS!!! (we’re undefeated!) And it’s the home opener for the Red Wings, GO WINGS!!! It’s a great time to be quarantined in the greater Detroit area :)

Sunday, September 25, 2011

I saw this video on animal planet once about the first few days of a baby giraffe’s life. He was all wobbly and tired all the time. It was adorable. His mom would nudge him to get him to try his legs out and he would hobble along for a bit until he got tired, and then plop down, exhausted, and wait for his mom to bring food or make him try again.

That pretty much sums up the week so far. With me playing the part of baby giraffe. I’ve spent most of the week in bed except when my mom is coaxing me out of it with the promise of food or just to move around. I haven’t felt nauseous or feverish (yay!), but holy smokes, I am tired.

I thought I should take the time to explain a little bit about what the next month or so are expected to be like. Aplastic anemia is such a rare disease, that there’s not necessarily a set script on how the ATG will work, which makes it a bit tricky, you see. In order for this treatment to be successful, the doctors are looking for any sign that my body is producing blood on its own (hence the count checks 3 times a week). The last time that I had the treatment, it took about 3 months before it started to work. Of course that doesn’t mean that it will be the same this time. It could very well work sooner. It could very well be later. (And it could just not work, but I like to keep that door firmly closed in my mind). So every week the doctors will look at my counts focusing on 3 things: Hemoglobin, Platelets, and White Blood Cells. I’ll try to post every week what my counts are for those keeping track also.

This week:

my hemoglobin is about 8.5 as of Friday (Normal is 12-15)

Platelets dropped to 13,000 (Normal is 150,000-300,000)

White blood cell count is 3.9

As you can see there’s a long way to go here, but as far as I’m concerned, the best part about being near rock bottom, is that there’s really only way to go. And that, my friends, is onward and upward. Who’s with me?! :)

Okay that is all for now. Hope the world outside of these four walls is going well. I miss it dearly already.

Monday, September 19, 2011

Plus one picc line, a few pounds, and a lot of medication, but it feels SO good to be home.

The treatment went pretty well this time. The first day was, as expected, the toughest. Before they start the chemo everyday a nurse comes in and gives premeds, which for me was Tylenol, Benadryl, and steroids. And let me tell you, you haven’t experienced Benadryl until you’ve had it injected directly into your bloodstream. That stuff is powerful. It only takes a few seconds before your head feels like it weighs 50 lbs. Which can be a good thing when you’re about to start 6 hours of chemo. Only problem is, that lovely sleepy feeling is followed by a high dose of steroids, which do NOT make you sleepy. Quite the opposite. Every sound is perfectly clear and sounds like it’s happening inside your ear. And your legs act like they’re about to take off and run a marathon. Like they just don’t understand why you’re laying down when they’ve got miles to run. And thus the battle begins between your groggy head and your twitchy legs. The good news is, your body quickly gets used to the medicine and by day two all these symptoms are less.

By the end of day one’s treatment, I had chills and was starting to get a fever and back pains. I also needed a blood transfusion because hemoglobin had dropped to 6.7 (normal range is 12-15). But you can’t have a transfusion when you have a high fever, so I had to take Tylenol and wait until my fever went down to get a transfusion. And it eventually did. And those 2 units of blood were glorious. The next morning I felt so much stronger, I never got another fever, and the next three days of treatment were a walk in the park in comparison.

My next objective is recovery. While I didn’t have as many side effects from the chemo as I did the first time around, I do feel more drained this time and I’m looking forward to sleeping at home and hopefully getting some energy back. There will be lots of movie marathons on the menu for me this week, I think :)

Thank you SO much for all of your prayers and words of support this past week. I felt and appreciated every one of them. Never for a moment did I feel like I was alone in this. Thank you again for reading :)

Sunday, September 11, 2011

Tomorrow is the big day. I’m starting treatment for my relapse of aplastic anemia. It will be the same type of treatment as I had when I was first diagnosed three years ago, so I know what I’m getting myself into this time. 4 (or 5) days of chemo (called ATG) in the hospital and then home to recover. The first day will be the worst, because the chemo contains antibodies from a horse and it is normal for the body to have a strong immune response to the foreign cells. And yes, they’re seriously going to put horse cells in me tomorrow. It’s kind of cool, actually.

It works like this: Aplastic anemia is an autoimmune disease. It causes my own T-cells (immune cells) to attack my bone marrow and prevent it from producing blood. This is no good, because obviously blood is quite necessary. So the treatment for aplastic anemia, is to suppress the T-cells so that the individual is free to start producing blood again. To do this, a horse is injected with human T-cells, which causes them to produce antibodies against human T-cells. Those antibodies are then extracted and given to me.

Still with me? :)

If not, it’s okay. Just thank a horse for me the next time you see one.

The biggest difference between this time around and last time is my mental state. I feel prepared. When I had ATG the first time, it was following this series of events which occurred over the course of 3 weeks:

I was told I was sick.

I was told I had leukemia.

I was told I had aplastic anemia.

I was told I didn’t have aplastic anemia.

I was told, we’re very sorry but we were wrong, you DO have aplastic anemia.

I was told I should do the ATG treatment

I was told I need a bone marrow transplant

I was told my siblings are not matches

I was told I have no matches in the bone marrow registry

I was told I should do ATG

And the day after my 21st birthday, I started ATG. And those are just the highlights, there’s even more to the story that I promise to tell you all about someday.

Needless to say, even though I’m only 3 years older, it feels like a different person is entering the ring this time. I have spent this summer mostly at home with my family. I have seen doctor after doctor after doctor. I spent about 2 weeks considering the scariest possibilities and there was one week where I cried everyday because I needed to mourn the loss of my healthy body and acknowledge how hard this is. But since then, I have slowly gathered strength. From seeing and talking to friends, being with family, going to church and resting my body, I’ve created an armor that I didn’t have before. I feel like I’ve looked my opponent square in the eyes, and even though it is just as strong as last time, there is an element of familiarity, and it no longer intimidates me.

Since it happens to be the tenth anniversary of 9/11, I’ll end this post with the last audible words that were spoken by the passengers on United flight 93.

Thursday, September 8, 2011

Everyone’s life contains some element of bitterness to it. There is something that happened to them that they wish hadn’t. Or something terrible that happened to a loved one. Or something they did that they regret. Everyone at some point in his or her lives is handed a lemon. Or two. Or a bushel. Or a whole stinking tree.

I believe that life's bitter, hard times, are inevitable and universal. No one is exempt from this. It is something that we all will eventually experience. And in theses moments when we’re being pelted with lemons by the mean old arm of life, we always have a choice. You can do nothing to stop the external forces of life. This is true. But as the saying goes, if you really wanted to, you could borrow a cup of sugar from your nice neighbor, and make yourself some lemonade.

Or you could gather up the lemons and put them in a pretty glass bowl and use them as a kitchen decoration.
Or you could use the juice from them to clean your dirty cutting board.
Or you could squeeze them over your apple slices to prevent them from browning, because nobody likes brown apples.
Or you could pick them up, give them your best heave and tell life, “While I appreciate the sentiment, I’ve had quite enough of this. Now kindly takes these lemons, and shove it. Please and thank you.”

The point is, that the world will spin madly on however you choose to respond to your lemons. So what if we looked at them as useful, potentially beautiful things, if we could just find the right angle, the right attitude, to let them be.

This is easier said than done, believe me, I know. But this is the story of giving it an honest try.

About Me

My name is Kelsey, and I am a 25 year old graduate student currently living in Pittsburgh. I was diagnosed with aplastic anemia in 2008, and successfully treated with ATG therapy before relapsing in the summer of 2011. I've made this blog to be a resource for others with aplastic anemia, to keep friends and family updated, and as an outlet for reflection on the journey for me. I will try to be as honest as possible about the experience of aplastic anemia, mostly for those who are also going through it, but forgive me if I have days where it's not my topic of choice. Thanks for stopping by, hope you enjoy :)